When Gloucester lock Ed Slater started feeling twitches in his arm muscles 11 months ago, he didn’t think much of it until it continued to happen 24/7.
Slater, 34, had the twitching feeling before, and his strength wasn’t affected at first, so it took two or three months before he told anyone.
“I didn’t want to face up to the fact that something could go wrong at that point until my arms and hands started to lose strength,” Slater told BBC Breakfast.
At the end of July, he announced Diagnosed with Motor Neurone Disease (MND) and confirmed his immediate retirement from the rugby union.
The No. 2 joined Cherry and Whites from Leicester in 2017 and was still in the game when the twitch started, making his last of 78 appearances for the club in January.
As symptoms worsened, Slater saw a neurologist at the beginning of the year. Doctors did tests and scans looking for potential injuries that could be caused by the rugby, but found nothing.
“Month after month my arms were getting weaker and my grip was getting weaker and I went to Oxford and was diagnosed with MND,” Slater said.
“Part of me was ready for it, partly because of weakness, partly because of symptoms.
“I know some very close friends who lost a family member because of it and was able to talk to them about his experience, so I prepared myself.
“I’m not saying it makes it easier to get diagnosed – it definitely doesn’t – but in some ways it’s 11 months of torture, different symptoms, not knowing, looking for different causes , and got a definitive diagnosis – which sounds odd to say – but at least it gave me an answer.
“Not the answer I want, but I can’t change it. My attitude is to keep doing things. There are hard things in life, nothing is harder, but you have to face the challenge head on.
“I’m not thinking too far about the future, I’m taking it every day. I’ve found that to be a peaceful place for me and keep me in the best shape possible.”
face new reality
MND is a degenerative disease that affects nerves in the brain and spinal cord. Slater isn’t the only athlete to have been diagnosed in recent years.
Former rugby union player Rob Burrow, former Scottish rugby union player Doddie Weir and former footballers Stephen Darby and Len Johnrose all have MND and are working to raise awareness of the disease.
While Slater has been “preparing for the worst,” he said his wife, Joe, had a hard time hearing the doctor’s message.
“When they started talking about the reality of it, we switched roles and my wife said, ‘This is what I can do to help,’ when actually that’s where I found it really hard and most emotional to be honest, “He says.
“Instead of getting the news, it’s really hard to talk to someone about the reality of your illness.”
The couple received advice on everything from how to remodel their house, how the disease would progress, how to apply for the blue disability badge and how to get the message across to friends and family.
Slater has taken steps – such as Former Burnley and Blackburn midfielder John Rose – Record his voice, MND is known to affect speech.
“It was like drawing a line at that moment that I wasn’t ready for,” Slater said.
“The time has suddenly sped up, which is a difficult point, but in some ways it has allowed me to focus on how I can help my family and create as little work for them as possible as things change.”
Telling the couple’s young children – a boy and a girl – was equally difficult.
“We want them to have as much information as possible without hiding anything, and that means talking about the reality of the disease,” Slater said.
“I don’t want them to see half the picture and understand the many changes going on around the house and in life.
“They’re young, so we tweaked it, but they’re amazingly resilient and in that moment, they might find it hard, but once they realise nothing has changed right away, they move on.
“They’re beautiful kids and they handle it really well. They pull out fun mono eyeliners and put a smile on your face. It’s a great comfort to just be around them.”
Grasp every day
Before moving to Leicester in 2010, Slater played in the British Championships in Sydney, Australia’s eastern suburbs and Nottingham earlier in his rugby union career.
He had a very successful seven years with the Tigers, winning the 2012-13 Premier League title and becoming captain. He also captained the England Saxons in 2014 before joining Gloucester.
Before his diagnosis, Slater was already at a certain stage in his career where he was considering a future switch to coaching, and Gloucester had already opened the door for him to work with their academy. It’s important to stay active for as long as possible.
“I feel like I’m fighting against something that’s improving,” he said. “But I have to be conscious and not wake up every day looking for something worse.
“I have to accept every day as it comes, but there are signs. When I’m here talking to the players [at Gloucester] I said I need to be normal. I don’t shy away from it, but at the end of the day, I’m a normal person. “
Slater now wants to add his voice to the conversation about MND started by Burrow, Weir and Darby.
On Monday, Slater and a group of his former and current teammates — including Fraser Balman, Lewis Ludlow and Billy Twelve Tries — began a 350-mile ride from Kingsholm Stadium to raise awareness and funds for the 4Ed campaign, which aims to raise money for his treatment and support his family.
“The club has come together and others have joined to promote cycling,” Slater added.
“It was a huge challenge, I didn’t have any training and neither did the people I depended on. I wanted to challenge myself physically and mentally, and sometimes I think there’s nothing better than being around people you love to be around. Do something really challenging while raising the profile of motor neurone disease.
“I’m very aware that there are a lot of people across the country who have this disease and don’t get the support I’m getting.”
‘Ed doesn’t want to be treated differently’
Sally Nugent of BBC Breakfast
When I first met Ed, I was struck by two things: his height (6-foot-6) and his ability to put everyone around him at ease.
We talked about rugby, the news and the work our BBC Breakfast team is doing with other athletes with motor neurone disease.
He’s been watching it all over the past few months, quietly suspecting he’s on the same path as Rob Burrow, Dodi Weir and Stephen Darby.
At first he didn’t want to tell anyone about the twitching of his arm and the weakness on his left side. But in the end he did, which led to an MND diagnosis at John Radcliffe Hospital, not far from where we are today.
I don’t see any clear signs of the disease we’re so familiar with now, but Ed said he already felt like he was battling something.
He’s a family man who shines when he talks about his children: two girls and a boy. His team was training below us as we sat in the stands in Gloucester. They didn’t get it for nothing and didn’t treat him any differently – that was important to him.
With that in mind, he will start cycling this week to raise money and awareness for MND.He’s not trained for it and they’ll ride on a borrowed bike, but he says his friends and teammates will help him through